Like many men, I read tabloid sports sections. In New York that means I read the NY Post and NY Daily News. The writing quality is not impressive. I am certainly not breaking any new ground here with this observation. Sports reporting relies heavily on well worn themes--praising the under dog, over coming injury, winning in spite of long odds etc. Redemption and overcoming are constants and often the subject of special interest pieces. A few weeks ago I read one such story. The story, "A Life Back on Track" February 6 NY Daily News, annoyed me to no end. The article by Wayne Coffey was about Andrew Lakeman. Lakeman was a New York based jockey. I use the past tense because in 2007 he suffered a bad spill at the track--that is his horse fell and " his body was crushed as if it were a potato chip". Lakeman suffered a complete spinal cord injury. The tone of this article is so over the top it is hard to believe. For example, Coffey wrote: "It's almost impossible to imagine anyone overcoming more than Andrew Lakeman, who knows little of what the future will bring beyond this: he will spend every day of it in a motorized wheelchair, paralyzed from the chest down". Please enter here soaring melodramatic music. I do not mean to diminish or belittle Mr. Lakeman. Any paralyzing injury requires a tremendous adjustment and time to accept. I do not nor I am sure does Mr.. Lakeman recommend the experience. But what the article does not delve into at all is why--why is paralysis so difficult. Why is it "impossible to imagine" how a person "overcomes" such an injury. I would maintain the hardest part about a paralyzing injury is not paralysis but rather the way society responds to paralyzed people. The article in the NY Daily News highlights the inherent social problems Mr. Lakeman will encounter. I find this ironic in that the article also chronicles with Mr. Lakeman's struggle with alcohol and drug abuse as well as bulimia. All these issues are handled well and respectfully. If one reads the article carefully it is obvious paralysis is terrible, a fate worse than death.
There is no way Mr. Lakeman can be average, normal if you will. There is no way he could respond with nuance to his disability and spinal cord injury. His friend, Kristina Dupps, a former trainer makes this clear. She is quoted as saying: "He's either going to shoot himself or make something good of his life". The fact is reality for people with spinal cord is somewhere between. It is not a world of extremes. What is extreme is the social reaction to Mr. Lakeman's injury. He apparently has the choice of giving up, committing suicide, something he considered, or overcoming his disability. Mr. Lakeman is no longer human for he has entered the dreaded territory i refer to as the "Super Crip" image. I have railed against this concept again and again. The "super crip" notion is a gross generalization that defies reality. It is also inherently dehumanizing. A paralyzed person can not lead a normal life and is reduced to the "super crip" who puts all those other weak willed lazy crippled people to shame. Mr. Lakeman is a hero! He refuses to give up. He wants to work at the track and train horses. Wow, is this not amazing! He is a saint because he is "happy to be doing what I'm doing now. I really would't change a thing. This is what I love". My question is simple: what other choice does Mr. Lakeman have. He is a good horseman and has spent his entire life around the track. It seems to me becoming a trainer or selecting any of a number of other jobs at the track is pretty reasonable response.
What bothers me about articles such as the one described above are the assumptions made and not so subtle subtext. Life after paralysis unbearably hard and an ordinary life is not possible. Those that attain such lofty goals such as a job and a complete life are hailed as super humans. Mr. Lakeman I am sure would agree is as flawed as he was before he was paralyzed. He is no different than any other trainer that can walk. Here is fascinating fodder for an article. How many paralyzed trainers are there in New York and elsewhere? What obstacles did they encounter at the track. Was it hard for them to find trainers willing to trust them with horses that routinely cost hundreds of thousands of dollars. I can think of one other name horse trainer based in California who trained Derby horse Brother Derek. Is there an association of paralyzed trainers? Mr. Lakeman trains one horse. How is his quest for owners and other horses going. Such questions are not addressed. Instead we get unfortunate lines such as: "Andrew Lakeman doesn't ride horses any more. He trains them. He moves his chair onto the platform and is hoisted up, and rolls forward and turns on the ignition [to his car]. For Andrew Lakeman, everything is new, his life free of alcohol and bulimia and free of limitations, too, no matter what the wheelchair suggests".
What exactly does a wheelchair suggest? To me it signals Mr. Lakeman simply moved on after a severe injury. It means he has a job and, like others trainers works long, hard, if not brutal hours with high strung animals that are worth a small fortune. The pressure Mr. Lakeman deals with is intense. But this is not the message the general reader will come away with. Mr. Lakeman is reduced to a stereotype--the "super crip". Thus the real hard questions are not addressed. Why are people with disabilities routinely unemployed? Why are housing options severely limited? Why is independence a struggle? Why is mass transportation still difficult to access twenty years after the ADA was passed? These are issues passed over and deflected. Coffey wrote that Mr. Lakeman "knew he wanted to be independent--he rejected the idea of returning to England because he did not want his parents to care for him:". This begs the question why Mr. Lakeman could not be independent in the United States. What support services were available? If there were none why was this the case. And more to the point why does it seem as though accepting such dependence was a reasonable response to paralysis. Like every other american I know, we fiercely value our independence.
Do not take my words as a critique of Mr. Lakeman. He works in a tough industry. The race track is littered with people who have substance abuse problems, marriages fail often under the stress, and a nomadic or seasonal lifestyle is the norm. While majestic, thoroughbred horses require intense effort to maintain at peak performance. The hours people work at the track are long and hard. Success at the track is based on one thing--wins. Those wins are hard to come by. If I were Mr. Lakeman I would be delighted by the article in question. It raised his profile and he may attract the interest of a horse owner. But I am not Mr. Lakeman. I am not a novice to paralysis and have spent 30 years thinking about the social ramifications of paralysis. I utterly reject dominant sociocultural norms associated with disability. I hope with time a more nuanced understanding of disability will emerge. For that to happen the content of articles such as the one discussed need to shift fundamentally. The questions asked need to be about the social implications of disability and not rely on outdated stereotypes. Such articles may sell papers but are ultimately destructive to the people with disabilities that merely want to lead an ordinary life.
Thursday, February 17, 2011
Monday, February 14, 2011
The Human Body: Can Disability Be Cool?
When I think of my wheelchair I think one thing: indispensible. I can assure you crawling is not an efficient means of locomotion. I cannot go far on the rare occasion when my wheelchair has a mechanical problem. I firmly believe wheelchairs need to be rugged in the extreme. When I get a wheelchair frame on the day it arrives I drop it out a third story window. If it survives the fall it is good to go. I have high end hubs and wheels. I have top notch upholstery. I change all parts that experience wear and tear on a regular basis. When I travel or go out on an errand I always carry a spare tire, inner tube and pump. I am in fact entirely dependent upon my wheelchair for locomotion. This dependency does not bother me one iota. I am very attached to my wheelchair. I love that it empowers me. It makes my life go. I feel at home in my wheelchair and there is a bond that is hard to describe. I was thinking about this bond as well as how frail the human body is this weekend. I am coming to the end of my journey with my wound. Within a few weeks or at most a month or two I will be up and around. I have found myself thinking that I want to in some way remember this time in my life. One way to remember is to modify your body. In a way I have already done that: I have grown a beard. I look like a paralyzed Santa Claus. My hair has little grey but my beard is white. But I was thinking of something more. Perhaps a tattoo or some other permanent mark. Perhaps some intense experience. I want to do something to remind me of this dark time. And if you think I am exaggerating I suggest you spend six months in bed in your own home.
My thoughts above have me looking through various body art books. I have an intense interest in body art and modification. I am thrilled and appalled at the way tattoos and body art have gone mainstream. I am thrilled because tattoo as an art form, a fine art, is now widely acknowledged. I am appalled because an under ground art form has been transformed and commodified. One can buy tattoo purses, wallets, sheets, lap top covers and Sailor Jerry rum to mention but a few items I have seen. The American Museum of Natural History even had an exhibit many years ago that thrilled me--until I saw the gift shop and how much it cost to enter the exhibit. The rise of body art has caught the attention of many academics. These academics talk about the post modern or post modern physical body. I lecture about this in one of the classes I teach, Body Art and Modification. I always hold this lecture off for the end of the term. It is a hard concept to grasp, the post modern or post physical body. I quickly learned to use popular culture references--the Terminator movies or any other reference to cyborgs. Students get this. They are all over this as it excites their imagination. I refer to prostheses, chips implanted in the brain, hearing aides, glasses, pace makers etc. The technology students get--they get it way better than me. It is an integral part of their life and upbringing. But they fail to see the whole picture--or least struggle with it. What do they struggle with: In the words of Stephen Kuusisto:
The post-physical body is a confluence of material reality and imagination but it is also co-determined by or within politics. The production of material culture is therefore still a matter of 19th century economics. Accordingly the cyborigian person with a disability is a hostage of sorts. We are, it seems, living in the age of the promissory “improved” body—yet that body is still stuck between the territories of production (politics), reproduction (material expense) and imagination (compulsory normativity).
Students, and I would venture to guess the average person, does not get the hostage reference used by Kuusisto. Sure technology is cool. The mix of technology and the human body is even more cool. But that interplay is subject to many other variables. Politics, culture, and economics are major influences. Wheelchair technology, especially power chair technology, is amazing. It can transform a person's life just as my wheelchair has changed mine. But what good is that technology if it is so expensive it cannot be utilized. And wheelchairs, wheelchair cushions, and the bed I am in right now are way past the budget of most people. This does not begin to address the issue of health care coverage of supposedly "complex technology". Worse yet, wheelchairs and associated needed adaptive devices are not seen as empowering by business people and politicians. They are seen as just costly. Socially there is stigma attached to some technology. People do not react positively to a power wheelchair. They are big, bulky, and powerful. People seem to want to leap out of the way or stare. I saw this first hand this weekend--I was able to get out and I was at the Home Depot. A man with his family was shopping. The man used a power chair and it was like watching Moses part the Red Sea. Wherever he went people scattered. This man's wheelchair was empowering to him but to the rest of the world, or those shopping at the Home Depot on Saturday, he was a person to be avoided.
Given the above i am skeptical about the post modern human body. Our acceptance of other bodies is socially based. The technologically to change the human body exists and it may be empowering but that empowerment is socially decided or constructed. To me my wheelchair is cool technology. To others, it is a sign of weakness and infirmity. Are hearing aides the elderly use cool? In a word no and I haste to ad not covered by health insurance. In contrast, cochlear implants are accepted technology and an entire industry now exists to support them. I could go on with multiple other examples but the point i am making should be clear. In only one instance have I seen a mix of technology and disability negate the stigma attached to wheelchair use. This is when I ski--sit skis for some reason are not only accepted but to a degree are socially prestigious. We can see this in the incorporation of mono skiers in the X Games and open acceptance of adaptive skiers at most ski resorts. I wish I could duplicate this elsewhere. In the mean time I am content with my white beard. It seems to have had a good impact on young children. I noticed more smiles from little kids in the few instances when I get out. Of course another interpretation could be is that I am simply getting old and they are smiling at the old guy--and the wheelchair and old age match in their minds. I do not want to think this way and will instead think I am more like Santa Claus.
My thoughts above have me looking through various body art books. I have an intense interest in body art and modification. I am thrilled and appalled at the way tattoos and body art have gone mainstream. I am thrilled because tattoo as an art form, a fine art, is now widely acknowledged. I am appalled because an under ground art form has been transformed and commodified. One can buy tattoo purses, wallets, sheets, lap top covers and Sailor Jerry rum to mention but a few items I have seen. The American Museum of Natural History even had an exhibit many years ago that thrilled me--until I saw the gift shop and how much it cost to enter the exhibit. The rise of body art has caught the attention of many academics. These academics talk about the post modern or post modern physical body. I lecture about this in one of the classes I teach, Body Art and Modification. I always hold this lecture off for the end of the term. It is a hard concept to grasp, the post modern or post physical body. I quickly learned to use popular culture references--the Terminator movies or any other reference to cyborgs. Students get this. They are all over this as it excites their imagination. I refer to prostheses, chips implanted in the brain, hearing aides, glasses, pace makers etc. The technology students get--they get it way better than me. It is an integral part of their life and upbringing. But they fail to see the whole picture--or least struggle with it. What do they struggle with: In the words of Stephen Kuusisto:
The post-physical body is a confluence of material reality and imagination but it is also co-determined by or within politics. The production of material culture is therefore still a matter of 19th century economics. Accordingly the cyborigian person with a disability is a hostage of sorts. We are, it seems, living in the age of the promissory “improved” body—yet that body is still stuck between the territories of production (politics), reproduction (material expense) and imagination (compulsory normativity).
Students, and I would venture to guess the average person, does not get the hostage reference used by Kuusisto. Sure technology is cool. The mix of technology and the human body is even more cool. But that interplay is subject to many other variables. Politics, culture, and economics are major influences. Wheelchair technology, especially power chair technology, is amazing. It can transform a person's life just as my wheelchair has changed mine. But what good is that technology if it is so expensive it cannot be utilized. And wheelchairs, wheelchair cushions, and the bed I am in right now are way past the budget of most people. This does not begin to address the issue of health care coverage of supposedly "complex technology". Worse yet, wheelchairs and associated needed adaptive devices are not seen as empowering by business people and politicians. They are seen as just costly. Socially there is stigma attached to some technology. People do not react positively to a power wheelchair. They are big, bulky, and powerful. People seem to want to leap out of the way or stare. I saw this first hand this weekend--I was able to get out and I was at the Home Depot. A man with his family was shopping. The man used a power chair and it was like watching Moses part the Red Sea. Wherever he went people scattered. This man's wheelchair was empowering to him but to the rest of the world, or those shopping at the Home Depot on Saturday, he was a person to be avoided.
Given the above i am skeptical about the post modern human body. Our acceptance of other bodies is socially based. The technologically to change the human body exists and it may be empowering but that empowerment is socially decided or constructed. To me my wheelchair is cool technology. To others, it is a sign of weakness and infirmity. Are hearing aides the elderly use cool? In a word no and I haste to ad not covered by health insurance. In contrast, cochlear implants are accepted technology and an entire industry now exists to support them. I could go on with multiple other examples but the point i am making should be clear. In only one instance have I seen a mix of technology and disability negate the stigma attached to wheelchair use. This is when I ski--sit skis for some reason are not only accepted but to a degree are socially prestigious. We can see this in the incorporation of mono skiers in the X Games and open acceptance of adaptive skiers at most ski resorts. I wish I could duplicate this elsewhere. In the mean time I am content with my white beard. It seems to have had a good impact on young children. I noticed more smiles from little kids in the few instances when I get out. Of course another interpretation could be is that I am simply getting old and they are smiling at the old guy--and the wheelchair and old age match in their minds. I do not want to think this way and will instead think I am more like Santa Claus.
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